ILLUMINATING THE PATIENT PERSPECTIVE: WHAT HEALTH CARE PROFESSIONALS SHOULD KNOW ABOUT LIVING WITH NONTUBERCULOUS MYCOBACTERIAL LUNG DISEASE

ABSTRACT

SESSION TITLE Outcomes in Pneumonia and NTM SESSION TYPE Rapid Fire Original Inv PRESENTED ON 10/17/2022 1215 pm - 115 pm PURPOSE: The purpose of this survey was to summarize demographic and clinical characteristics and identify patient perspectives in a cohort of people living with nontuberculous mycobacterial (NTM) lung disease to get a better understanding and perspectives of the patient population living with this disease. METHODS: In partnership with the patient advocacy group NTM Info & Research, we created and disseminated a survey to adult patients living with NTM lung disease. Survey participation was voluntary, and no incentives were offered. The survey focused on key clinical characteristics related to NTM lung disease and qualification and ranking of symptoms. Respondents were asked which HCP(s) they accessed for their NTM lung disease care, how their care could be improved, and to what degree the COVID-19 pandemic has affected their care. RESULTS: Respondents’ (N=90) mean age was 61.5 years, and 91.6% identified as female. Two thirds resided in North America. Most 86.4% identified mycobacterium avium complex (MAC) as the strain with which they were infected. Coughing (81.7%) and fatigue (80%) were most frequently reported. Fatigue was ranked as the most bothersome symptom, followed closely by coughing. These data are consistent with previous studies and patient reports, FDA-led Patient-Focused Drug Development (PFDD) meeting data, and a survey conducted by NTM Info & Research in 2019. Nearly all respondents (96.5%) reported accessing a specialty provider for their NTM lung disease. Close to one third (31.6%) accessed care from a respiratory specialist. Approximately half (53.6%) reported that the COVID-19 pandemic did not significantly affect their NTM care. Respondents reported on aspects of their NTM lung disease care that they would like to see improved. Common themes included earlier diagnosis, sooner evaluation by a specialist, shorter treatment courses, and more education about the disease and its treatments. CONCLUSIONS: Fatigue and coughing are both the most reported and the most bothersome symptoms reported by patients with NTM lung disease. Respondents would like to have been diagnosed earlier, have access to more efficacious and shorter courses of treatments, and be provided more information about their disease and the therapies used to treat it. Respondents would also like HCPs to be better educated on these same topics. These data illuminate the patient perspective so that HCPs who treat patients with NTM lung disease may be better informed of patients’ experiences. CLINICAL IMPLICATIONS Improved understanding of demographics, risk factors, and clinical manifestations of those with NTM lung disease assist in population surveillance and timelier diagnosis of the disease. A better understanding of patients’ concerns, fears, and hopes is crucial for effective shared decision making and creation of individualized care plans. The ultimate goal is to improve outcomes for patients with NTM lung disease. DISCLOSURES Stock owner relationship with Abbott Laboratories Please note 10/2018-10/2020 Added 03/16/2022 by Sarah Anderson, value=Stock owner Stock owner relationship with Johnson & Johnson Please note 10/2018-10/2020 Added 03/16/2022 by Sarah Anderson, value=Stock owner Stock owner relationship with Merck Please note 10/2018-10/2020 Added 03/16/2022 by Sarah Anderson, value=Stock owner Advisory Committee Member relationship with MannKind Corporation Please note Feb 2022-Present Added 04/18/2022 by Amy Leitman, value=Travel